No one thought she could have HIV. She was a middle class mayoral aide, a heterosexual woman, and she had me, a perfectly healthy toddler. She was not an injection drug user. That wasn’t the kind of person who got HIV—the gay man’s disease.
These stereotypes kept my mom from being correctly diagnosed with the virus in the early 1990s. The thought that it might be cancer, the copious amounts of medication, the endless questions and confusion—it all amounted to wasted time that ultimately cost my mom her life. All because no one thought to test her for HIV, because she did not fit the stereotype.
More than 30 years since the first case of HIV was reported in the United States, the same misinformation that prevented my mom from receiving an accurate diagnosis still runs rampant throughout the world.
Just this month, a white HIV-positive woman in the United Kingdom admitted during a talk show appearance that she “didn’t know anything about HIV” and “thought you got it in Africa.”
Rachel Dilley said she contracted the virus when she had unprotected sex nearly a decade ago. “I didn’t know a white person had ever got it,” she said.
And late last year, communications executive Justine Sacco tweeted, “Going to Africa. Hope I don’t get AIDS. Just kidding. I’m white!” from her private Twitter account.
Sacco’s comment elicited heated responses from around the world, with some claiming they hoped Sacco would get fired and contract HIV and others joking they were worried about her, followed by ‘just kidding. I’m black.’
Immediately, the hash tag #HasJustineLanded was trending on the social media site and parody accounts like @loljustinesacco making fun of Sacco and her remark emerged.
By the time Sacco arrived in South Africa, her employer, InterActiveCorp, had parted ways with her, citing, “There is no excuse for the hateful statements that have been made and we condemn them unequivocally.”
Contrary to the misconceptions raised publicly in these two recent cases, there are currently 35.3 million people worldwide living with HIV, according to UNAIDS, with 2.3 million people newly infected each year.
The most recent report from the CDC found that 1.1 million people living with the virus are in the U.S. alone. And while it is true that HIV disproportionately affects certain racial groups, there are at least 13,000 people in the US living with HIV are Caucasian.
“We have made great strides in the fight against HIV, but it is not gone and remains an important public health issue in the United States and abroad,” CDC spokesperson Salina Smith told me in a recent interview.
Myths like those advertised by Dilley and Sacco could prevent timely and appropriate treatment of HIV/AIDS. Misinformation may lead people to believe they are not vulnerable to contracting the virus because they are white or have never been to Africa, Laura Bogart, associate professor of pediatrics at Harvard Medical School and Boston Children’s Hospital said. Bogart studies what people know about HIV and how they come to acquire that information. She tracks both accurate and inaccurate held beliefs.
“People learn myths from others in their communities and social networks,” Bogart said. “Something you hear in your community becomes the norm unless we can get correct information in public domains.”
This is the danger of misinformed or stereotypical comments on media platforms, such as television or Twitter.
“At this point it’s hard to know if misinformation or great information is prevailing online,” said Nathan Matias, a Ph.D. student at the MIT Center for Civic Media and a fellow at the Berkman Center for Internet and Society, who recently sought to counter the erroneous information shared in Sacco’s now infamous tweet.
Two and a half hours before Sacco landed last December, Matias and his colleague Perry Hewitt, chief digital officer at Harvard University, created a website called “Going to Africa” with links to AIDS relief funds, informational sites about AIDS in Africa, blogs about Africa, and information surrounding the history and politics of HIV.
“We both realized that although what Justine Sacco said was unconscionable, the knee jerk reaction on social media, though coming from a good place, was often not addressing the issues and ignorance that Justine was showing in her own tweet,” Matias said. “Perry and I wanted to be able to link to something that had factual information about AIDS in Africa and realized there wasn’t a clear resource.”
Medical experts and others versed in HIV education have since contributed resources to the site, which has received nearly 30,000 visitors.
But educating people alone isn’t enough, according to Bogart, who says that it could be helpful for people to see HIV positive people who look like them—perhaps in awareness campaigns and in the media.
“Having people come out and say I have HIV and showing that they are human is a way to elicit empathy for people living with the virus, which makes others more likely to be concerned and care,” Bogart said.
But how can that happen if stigma makes it harder for people to be open about their positive status? If stigma lowers the number of people with the courage to get tested, doesn’t that put everyone, those infected and those not, at risk?
Bogart said that when HIV-positive people seek and stick to treatment, it “is helpful for both HIV-positive people and for prevention.”
Still, people who are discriminated against are less likely to take their medications. Imagine the embarrassment you might feel going to a doctor for HIV medication if you are worried your peers might question your doctor visits or why you take certain medication. The result of such fears is a never-ending cycle putting us all at risk.
“Understanding what places you at risk and how to protect yourself is critical to combating the misconceptions that persist more than 30 years into this epidemic,” CDC’s Smith said. “It is important to know that if you are sexually active – you are at risk.”
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